Angry. fustrated fed up

[forte]

I been having joint pain. My self personally because of my Remicadee On monday the pain was so bad i couldnt walk. All i could do was cry i tried to get ahold of my GI but he is out of town til the 7 of october. Thats bummer so took two tylenol 3 that did not help with the pain. Went to emergency at hospital. They made me sit and wait. And wait. They did not umderstand pain and thought i was in there just for the drugs. I left after being treated like crap. Went to see my family physician. She prescribed me with prednizone 10 mg a day. Helped for the first day but the following day was misery. I seriously couldnt walk. I had to call the ambulance. It was so aweful that the attendents couldnt touch me i hurt all over once at the hospital. They took me placed me in a wheel chair nurses orders and placed in waiting room where i remained for 8 hrs. Finally when the dr did see me. They treated me like i was a liar. I was only there for the drugs. I am not a pill popper. And hate taking pills. So all they did was upped prednizone up 10 mg and sent me home. I am still feeling miserable. Told me as i was leaving to stop coming to the hospital and follow up with my phusician well what an insult. If we cant depend on the expertise of our drs then what do we habe them for. At one point i had to go to the washroom. I paged the nurse. They sent an orderly well well ignorant. I had hard time to walk. I got in wheel chair and she didnt put the foot pedals down i had to hold my legs up painful. And when i was finished in the washroom. I was getting into the wheel chair she says hurry up i have other things to do
Why do we get treated like this. No faith in my hospital. No faith in anything. But on nrigjter note. Steriods is helping. At least i am walking a bit. But for how long??

 

[David]

Hi there. I'm so sorry to hear of your struggles.

Let me see if I follow. You're been experiencing terrible joint pain since starting Remicade? How many infusions have you had? Do you have a rash anywhere or any other symptoms?

 

[forte]

i started Remicadee treatment in sept 2011 and things were working fine but gradually my knees started to get sore..had hard time to walk the stairs 6 months after treatment... i have had 16 treatments so far and i dont have any rashes. i do break out in ichy hives ever so often but they go away i get significant swelling on my body.. my fingers will sweel for no reason. or the palms of my hands will swell and be very painful. some days the bottoms of my feet would swell that i cant even walk.. but the past month since my last treatment or Remicadee i had one day of no pain and then it just became worse.. to the point that everything hurt. i cant walk. and can't work.. because of the amt of stairs i have to climb on a daily basis.. i seen a rhumatoid arthritis dr at the hospital and she wants me to go for my reg treatment. which is tomorrow morning.. yes i am scared.. i also see dr schewagger as my gi and to not help matters he is out of town til the 7th of october.. so i am in a mess.. i am currently taking prednizone 20 mg in the morning and 20 mg at dinnertime.. 5 pm. but just as i am to take my 5 pm doseage i start to feel the joint pain all over. .. my blood work showed that i have a significiant high level of inflammation. but i know my body. and i once was a very active person.. and now i cant do anything.. and i know deep down it is the Remicade..but on the lighter note i haven't had any swelling since i started the prednizone.. it is just the joint pain.. elbows ankles knees shoulders wrists. even my hips which is something that just started..
thank you for your message.. i am really looking for answers and i gave up on the expertise of our hospital, and cant wait for my GI to come back..

 

[David]

I suggest you give this a read and see what your doctor thinks about it if it strikes a chord with you.

 

[forte]

thank you David... i really appreciate this... i am actually at my wits end. and dont know what to do anymore.. i take clonazapam also for anxiety.. it is helping.. i am so glad i found this forum.. it has opened up so many chapters for me.. and realise that i am not alone..

 

[David]

No problem. For purpose of the article I linked, just in case you don't know, Infliximab = Remicade.

 

[Dragonfly72]

I am so sorry you are going through this, I will keep you in my thought's! Being a Nurse myself with CD, I apologize for the way you were treated.

I promise we are all not that disgusting! If you feel comfortable, I agree with David you should let them know, and (them) i mean is is a certified letter to the CEO or Head Nurse of the hospital. I would send it certified where they have to sign for it to the CEO/Head Nurse of the hospital!

Behaviors like you experienced will not be corrected if they don't know and I am sorry there is no excuse to make a patient feel worse than they already do!

Best of luck and keep us posted!
Xo
M

 

[meg091]

HI FORTE!

OMG you have made my day! I am also experiencing the same problem as you ! I posted a post late last night about my joint pain to see if anyone else has this problem as like you I am absolute fed up! im 21 and I'm struggling big time with my joint pain, mainly in knees, ankles, elbows and fingers. I have been on inflixmab for almost 8 years now and the joint pain has been occurin for the last 3-4 years. After my infusion I am cured of joint pain but around the 6 week mark my life becomes hell. I have my infusions every 8 weeks. My doctor tells me there isn't much more they can do? I rang her crying the other day as I was in so much pain, she wasn't one bit concerned. I explained to her that I'm at my wits end. I'm 21 and struggling to live my day to day life because of the pain. I'm terrified what is going to happen for the rest of my life not to mention when I want kids? So my doctor talked about taking me off infusions, to what does not make any sense as it actually helps my crohns it's like magic but she seems to think if she takes me off infliximab it will help?? What else can I do?? i can not put up with it anymore. Since your post have you got any more answers?? I'm so eager to try anything. I am becoming depressed because I can't do anything and once I finish work come home sit on couch, I've put on 8 kilos as I can't exercise due to pain, I can't go out with friends as I can hardly walk and not to mention work... also a major struggle at the moment.

 

[forte]

oh darling i am so sorry to hear that your going through this. and at such a young age.. i understand totally what your going through..and i for one understand the pain.. dr put me on steriods predisone so i am doing a bit better.. at least i am walking. and i dont have any swelling in my joints.. where i was effected in the same area's as you. but it was also in my pelvis.
i went for a treatment of Remicadee on tuesday and woke up the following morning with my left elbow swollen.. but the reason for me going for treatment was so that the arthritis dr that i seen at the hospital wanted to see if it is the Remicadee or arthristis. so yeah i went.. i regret it and know that i will suffer for this next month. but as of today i feel good.. but i find that since my treatment i have been getting bloating and gas pains and discomfort in my abdomin where i wasnt.. ..
it is not fair that the dr says there is nothing they can do. we depend on them for their expertise and we are used as guinea pigs. they are the ones that recommended these drugs. follow up on it. know it..
my GI is out of town right now.. he will be in his office on the 7th of oct. so i have to wait til then to see him. so i will only have more answers later..

the previous posts from David really helped with me and really makes alot of sense.. did you read them.. it is a blue writing says read this.. and makes alot of sense.. medical induced lupus.. throw that information at your dr.. they budge. my family physician surely did when i came to her with it yesterday.. we have to do our research. we have to try to be smarter then them. i know i am angry with the medical profession. and i am in their face right now with the attitude " fix this!"
i know it is hard to say but dont be depressed.. i know it is hard.. the most important thing you can put on daily is your smile!! if you remain positive things will go positive. i am blessed to have my family to keep my spirits up and make me laugh. so as myself being prone to depression i know what the pit of hell is like. keep your chin up darling and if you need it.. i always keep a spare smile in my pocket for anyone who needs it..
its yours for the taking.. look at yourself in the mirror and say i am going to beat you.. not you beat me!! keep in touch. and i would love to continue hearing from you. i love this site.. i been speaking to different ppl and finally understanding that i am not alone.. which is a great comfort..
drugs i am on right now is
prednizone 20 mg twice a day
Remicadee infusion every 6 weeks.
delodine for pain
and love and hugs from my family unlimited..